~Rumi

All day I think about it, then at night I say it. Where did I come from, and what am I supposed to be doing? I have no idea. My soul is from elsewhere, I'm sure of that. And I intend to end up there...Who looks out with my eyes? What is the soul? I cannot stop asking. If I could taste one sip of an answer, I could break out of this prison...I didn't come here of my own accord, and I can't leave that way. Whoever brought me here will have to take me home.

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04 February 2010

Misperceptions About Diagnosis of ASD in Adulthood


Some people believe individuals identified with Autism Spectrum Condition in adulthood have less impairment and better overall functioning across the board. This is a perfect example of a biased belief that does not apply to all individuals identified in adulthood. It is a myth that serves to disadvantage late-diagnosed adults, as well as undermine healthy views toward this population. 

Some autistic adults may have been previously misdiagnosed with conditions such as ADD, intellectual disability, OCD, a personality disorder, schizophrenia, et cetera. This is especially true for adults born before autism was included in the Diagnostic and Statistical Manual of Mental Disorders (though autism is contained and defined in the DSM, autism is a neurological condition that is classified as a developmental disability. It is NOT a mental disorder).

Asperger’s was not introduced into the DSM until 1994, which explains a notable percentage of adults recently identified as Asperger's autistic (it's important to note that these adults are often included in current autism statistics). 

Should we assume that individuals who meet the requirements of an ASD diagnosis in adulthood (of which a mentionable percentage may have been hospitalized or suicidal at one point in their lives) have little to no support needs due to their acquired ability to often pass as what is perceived to be normal? Does learning how to cope with, cover up, or even hide a disability mean than a person is not really disabled, or that such a person has grown out of a disability? I strongly disagree.


How do such assumptions positively foster understanding of late-diagnosed autistic adults? It takes a lot of courage to question or seek an autism assessment as an adult. Autistic adults--in addition to those who are deeply familiar and personal with autistic adults--have related that in many cases, the functioning or impairment of an autistic adult may actually be similar to what may be seen in autistic children, yet the autistic adult’s ability to compensate for it, or hide it, may be anywhere from mild to moderate to extreme in sophistication.

Some individuals who are diagnosed as having ASD in adulthood may have light support needs. Others may have moderate or heavy support needs. These needs can and often do vary over the course of a lifetime (ex: light needs one season or year, and moderate or heavy needs the next). Day to day variability across the lifespan, and task-based variability, are important points that are in no way tied to what age a person is when diagnosed with an ASD.

Most, if not all, individuals on the autistic spectrum have uneven skills and strengths. An example of this would be an autistic person who is a computer whiz, yet challenged or completely incapable when it comes to attending to self-care needs, checking the mail, grocery shopping, housekeeping, or preparing a sandwich. It is important not to box and rigidly classify individuals on the spectrum by using only functioning levels, which are subject to incongruence and variability.

Myths about autism and late-diagnosed adults too often lead clinicians, community members, families, and service providers to believe or say unfortunate things to late-diagnosed adults on the spectrum. Some examples:
  • “The fact that you can walk into my office and ask for a diagnosis means that you cannot possibly have an ASD;”
  • “I don’t agree that you have an ASD. You seem to have a great sense of self-awareness, plus you are quite articulate;”
  • “You get overstimulated in daily life? So does everybody;”
  • “You think your employment issues are related to autism? You’re just lazy;”
  • “Your level of intelligence makes it hard for me to believe that you could possibly have any support needs;”
  • “You have friends plus a significant other? No. Autistic people are incapable of that;”
  • “You don’t look or seem autistic. My cousin and my best friend’s children are autistic and you are nothing like them;”
  • “Your ASD is very slight, if that. The fact that you have received a diagnosis in adulthood means that you are obviously capable in daily life.”

I am profoundly deaf. In addition to American Sign Language, I successfully use a cochlear implant. My cochlear implant has significantly increased my speech intelligibility. Acquaintances and strangers may not ever suspect I have a profound hearing loss. Matter of fact, if someone were to ask an acquaintance or stranger if they think I am deaf, they may likely respond with something like, “No, E. could not possibly be deaf. She hears and speaks to me just fine.” And they would be absolutely certain.

But in reality, I am deaf, and without the use of ASL, my ability to easily communicate in situations where there are either a lot of speakers or significant background noise, I am at a loss. Without my CI, my world is nearly silent (which I happen to like). I do not try to pass as a hearing person, but I cope with my deafness in a hearing dominated world by advocating for my needs. 

Does the ability to set up ideal communication or hearing environments whenever possible make me any less deaf? Not according to an audiological instrument that measures hearing loss.

My deafness is a HUGE issue when it is not accommodated, yet it can easily be undermined or go undetected when I have appropriate useful assistive devices, communication, and support in place. Without such supports, the change in my functioning level (outside of my comfort zones) is immediate and radical. Take away my ability to advocate and set up ideal environments and there would be absolutely no room for denial in regards to my hearing loss. 

The same goes for my diagnosis on the autistic spectrum.
 
I am self aware enough to know how to set my world up so I can function best. I know what to avoid, and I constantly strive and struggle to know what routines, support, and whatever have you I need to be my most successful in life. I am a highly self-determined individual. But again, without the supports I have in place, my whole world would come crashing down and the person I am with intact aid would become significantly less functional. The last thing I would need at that point is for someone to deny me assistance based on misleading assumptions, perceptions, or myths.

I cannot put words to how adverse, damaging, demoralizing, and depressing it is for autistic adults who have gathered enough skills to fit in—in this often unforgiving world—to not always be able to count on being taken seriously by the very people who are appointed to help them.

Most individuals identified as having an ASD in adulthood have less impairment and better overall functioning? I disagree. I recommend something more appropriate and useful, such as: autism may present differently in adults than it does in children.

20 comments:

  1. Thank you, Elesia, for a well written and much needed article. There are so many things I struggle with on a daily basis, that people in general seem to dismiss since, b/c I seem to be "intelligent", or because I can paint, everything else should be a piece of cake. As if! And it's not wanting sympathy, either, but just plain understanding. As the years go by I just become more isolated, and am fearful about how I'm going to be ending up. Thank you for this.

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  2. Hello Nanne! Thank you for reading. I am so glad to have your support. Your comment serves as further education about, as well as reinforcement of, my message. All my best!

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  3. Good points, Elesia.

    I have indeed been told I am too articulate to be Really Autistic --- a general-psych professor I had told me that, if he were evaluating me now, he would not diagnose me with any ASD.

    @Nanne,
    "[I]t's not wanting sympathy, either, but just plain understanding."

    Yes, absolutely.

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  4. Lindsay, the story you shared about your general-psych professor is all too common in the world of autism. Your experience is somewhat similar to the experience Kate Goldfield related when I interviewed her for World Autism Interviews.

    Thanks for stopping by!

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  5. Excellent point, Elesia. Timing of diagnose and functioning while receiving support is no reason to deny someone support.

    It seems strange to have to say that functioning levels are variable. Good days & bad days. We all have them. Good environments & bad environments. We all experience them. Why is it not self-evident that a bad day in a bad environment is going to lead to more support needs and less functioning? Or even a bad day in a good environment or a good day in a bad environment? If we can recognize that everybody experiences these, then why is it so hard to understand that people who are experience extraordinary challenges will be more affected by these experiences?

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  6. @Stephanie: Thank you for your insightful comments. I appreciate you visiting my blog!

    I would like to post a comment from another Aspitude reader who commented on this post directly to my email:

    "I just read your article, "Misperceptions About Diagnosis of ASD in Adulthood," and would like to sincerely thank you. My daughter was also diagnosed with Asperger's syndrome in adulthood, and is frequently misunderstood because of her pattern of skills, and deficits. We also have an adult son with autism, who was diagnosed as a child.

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  7. Elesia well written and something that needs to be spoken about more, many doctors worldwide do not even diagnosed adults as such, they feel its more a case of helping to fix the problems... of course they have no idea how it affects every aspect of our lives, of course we all learn to adapt, change and play the part, often at our own expense, like you I manage because I recognise my strengths, can mask my weaknesses, but that can be exhausting being in a world that often causes much of our frustration and alienation, I can not help being me and quite happy with who I am, my only problem often being society not getting or wanting to allow!

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  8. Salutations Alyson! Thank you for adding your input.

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  9. Elesia,

    Thank you for your enthusiastic welcome! Reading those always gives me a smile.

    Alyson made a great point. It is exhausting to adapt or mask these challenges to better fit in. Would you consider adaptation more difficult, and thus more exhausting, as an aspect of the social challenges of autism? Or is that something you would disagree with?

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  10. Stephanie,

    I have turned my answer to your questions above into a blog post. It will be up sometime tomorrow. Thanks for inspiring me!

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  11. Thanks for this post. My mom still doesn't believe I was diagnosed by two seperate doctors because she hasn't seen it in writing.

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  12. Hey there Velvetgunpowder! Thanks for stopping by--I'm flattered! :)

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  13. Very well written indeed, and so true...I have spent half a century perfecting the art of surviving around my autism and looking "normal" for the minute amount of time I can bear to spend with people...trouble is that took up so much of my time and energy that there never was, and never will be, anything left to actually have a life with.

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  14. @ Gaye: Thank you for visiting, as well as for adding your comments. When readers add comments from their own experiences, it serves to strengthen the messages in my posts. Also, it serves to educate readers who may be less familiar with the inside world of autistic people.

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  15. i enjoyed this post. i particularly liked your example quotes, i think i have heard most of them. :)

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  16. Thanks for visiting Amanda! :)

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  17. I had a very frustrating experience this week with the Department of Rehabilitation, including this gem of an official opinion from their industrial psychologist:

    "Asperger's syndrome is NOT a disability, because Bill Gates has it, and HE founded Microsoft."

    Gee, does that mean that lower limb paralysis is not a disability because Franklin Delano Roosevelt was paralyzed from polio, and HE was elected President four times? I'd like to see what would happen if they tried that argument on their clients in wheelchairs...

    And as far as I'm concerned, the whole "Bill Gates is an Aspie" is an urban legend concocted out of speculation, just like rumors that so-and-so is gay, etc. If he's an Aspie, why is he so aggressive in business and downright dishonest sometimes?

    Appropriate complaints have been filed over this, as the DoR has no excuse to be ignorant over Asperger's in this geographic area.

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  18. Hello Anonymous,

    I appreciate your input. And your experience with that psychologist is atrocious. When I hear stories like that, I am reminded why I work in the field of disability rights. How are individuals on the spectrum supposed to get the help they need when diagnosticians put stock into myths about autism. Bill Gates just might be on the spectrum (I cannot speak on his business tactics or personality, but I personally know people on the spectrum who can be aggressive and dishonest). The problem here is that people are trying to box autism into a nice neat little definition when autism is a spectrum. How come non-autistic people are afforded a wide variety of ways of being, but autistic people are not. What sense does that type of thinking make?

    On a lighter note, best of luck to you, and thanks for visiting!

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  19. I came into contact with this post through facebook, and I find it spot on correct.

    I have not been formally diagnosed as being on the spectrum, but many who are either Dx'ed or have family on the spectrum have suggested it to me. I find I'm more Aspergian, even though some days I feel like I've successfully "fit in".

    I've had my therapist tell me that he "just doesn't see it", and has Dx'ed me as Schizoaffective (however, when asked what specifically is defining me as such, he says that he "doesn't believe in labels". I've left him).

    There are some days where I wonder if I am on the spectrum or not, but I can tell that my difficulties with social situations and confusion in situations with sensory overload is not me just being lazy or antisocial. I quite like people, but sometimes I just don't feel connected with them. I'm getting much better since finding GRASP and other networks, but I wish that the awareness towards ASDs was more prevalent.

    Thank you so much for your post! I hope a good number of nypicals get to read what you've posted. It's great to read, really bolstered my mood. Hope you have a good day!

    Jim

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  20. @ Jim: Thanks for stopping by Aspitude--I appreciate your support!

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